The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

Do you want to post comments on the newspapers that misinformed about XMRV? These are some of the best ideas I've found...

Do you want to post comments on the newspapers that misinformed about XMRV? These are some of the best comments I've found written in blogs and posts. Share them as much as possible, and please make our voice be heard!

1) I was greatly saddened to see on May 31, 2011, Science "Editorial Expression of Concern" (EEC) regarding Lombardi et al (Oct 2009). It was a surprise to many of us that scientists found XMRV associated with CFS patients, though it was not the first time that scientists linked a retroviral agent to CFS patients given the severity of neuroimmune issues patients have and the fact that the most severe patients appeared to doctors as non-HIV AIDS. This action on Science part is "premature" to say the least. In fact, the EEC all but admits this outright: "Science eagerly awaits the outcome of these further studies and will take appropriate action when their results are known." I dare say you've already taken action (albeit of a purely inappropriate sort) in the form of this editorial and your request for retraction. Unfortunately, these actions will do little but cast a shadow of intimidation over the future of XMRV/HGRV research; a future that you simultaneously concede is still playing out. Was it your intention to foster intimidation and short-circuit the scientific process?

2) Science requested prior to publication that CFS be removed from the paper entirely. Whoever made this request was well aware of the politics surrounding CFS research and that Science would have to stand behind publishing new scientific findings for a controversial disease. I am disappointed to find that ScienceMagazine apparently does not carry enough weight on its own accord to do so, and can fall so easily to government and scientific pressures to bury evidence of an infectious retrovirus affecting not just CFS patients, but numerous other related neuroimmune diseases and cancer. Why are you trying to make certain XMRV has nothing to do with CFS?

3) While scientists see patients as a frenzied mass of believers who should be dismissed due to their lack of formal scientific training, all I see is the CFS community asking for proper basic science. The medical establishment has been cool to the Whittermore Peterson Institute, and the NIH has turned down all six researches grant applications they made last year. If there is no money, no more research can be afforded. Is that the purpose?

4) It is well-known that since the publication of Lombardi et al, its authors have been blocked from publishing further evidence in support of their original paper. The truism that "negative studies are rarely published" has been turned upon its head with respect to XMRV research, where those who have demonstrated an ability to find the virus are starved for resources and shunned at every turn, while those who demonstrate abhorrence toward genuine replication are lavished with funds and granted journal space without so much as the peer-review equivalent of a gentle pat down. Studies that prove their assays can only detect spiked plasmid to a certain degree of sensitivity without also clinically validating those assays are being given equal weight with positive studies. Why is the scientific community doing so?

5) None of these negative studies, including Knox et al, represents a genuine replication attempt. This has been made clear by Annette Whittemore's detailing of many (though not all) methodological differences in response to Science EEC. It should not need to be reiterated that no number of non-replication studies can ever substitute for genuine replication, especially when employing techniques as intricate as those in question. How is it that the world's premier scientific publication can be persuaded by quantity over quality, by tally over technique, by rhetoric over replication?

6) None of the authors of negative studies to date have proven the ability of their assays to detect virus in human clinical samples. In the cases of Knox et al and Shin et al, the authors clearly demonstrated the insufficiency of their assays against clinical positives. In all of these negative studies, only the analytical sensitivity and specificity of their assays was shown, and this was assumed to be sufficient. Needless to say this would not be sufficient for any assays intended for clinical diagnosis. As the issue here is to determine disease association with a retrovirus with a very low copy number, it is vital to prove that one's assay can detect viral nucleic acid sequences in their natural matrix and naturally occurring structures (circular DNA, pre-integration complexes, and integrated DNA), which are very different chemically and physically from plasmid spiked into water, placental DNA, or even blood.

7) Who were the peer reviewers of both Paprotka et al and Knox et al? Have any of the reviewers displayed prior public bias against the original Lombardi et al findings? Will Science grant the authors of Lombardi et al time and space to augment the findings of their original paper with new data?

8) Was Science made aware of the gross conflicts of interest between Konstance Knox and the WPI prior to its publication of Knox et al? If so, how did it deem these conflicts of interest acceptable and why were they not included as part of the publication? If not, will the publication of Knox et al be reconsidered with respect to this information? I sincerely hope that Science hasn't become a willful vehicle for vendetta.

9) Your statement indicates that you ask for voluntary retraction based on other groups not finding XMRV within an 18-month time frame. Is this typical? If this were any other virus associated with one or more diseases, would 18 months really allow for adequate research, especially in the case of viruses that prefer tissue over blood? It calls into question the true nature of scientific research and its ability to strive for objectivity without political motivations.

10) Dr. John Coffin, why is WPI/NCI able to find antibodies to XMRV if this is a matter of contamination? And if contamination is an issue, then why would both the Alter/Lo study and Lombardi/Mikovits study have only 4-8% positives in their healthy control groups? It takes only a rational, alert mind to understand that if test tubes and samples are contaminated with mouse DNA, it would be generously spread throughout other samples. And it can't be both a contaminant and not be there at the same time. Which is it?

11)These recent studies do not imply nor intend to prove, that all positive results reported thus far are due to contamination, and that XMRV in humans can be dismissed as an artifact. The most important remaining questions are: does XMRV infect and replicate in humans, is it a genuine human virus apart from being an easy and frequent contaminant, how did XMRV end up in humans and is XMRV infection associated with disease?

12) Schekman said:it's part of the scientific process for different groups to publish findings, for other groups to try to replicate them, and for researchers to debate conflicting results. Even if the original findings in a paper don't hold up, "that is an unusual situation to retract a paper under.'"

13) Why would Science ask to retract and put out an Editorial letter of concern before the Lipkin study is completed? Are you in a hurry because you are afraid that Lo and Mikovits will replicate their own work? Dr. Ian Lipkin said: "Calls to retract the paper at this point are premature. We need to let this study take its course, look at the data in a coherent fashion and figure out what it tells us. While interesting, the publications don't dissuade us from continuing our work."

14) We all know that science is full of cases where the original discoverer is discredited and marginalized to allow someone else to end up taking the credit (and making the money!) for the discovery. I'm afraid this is what we are witnessing here and I can even have a guess of who will end with the credit.

15) CFS has been around for centuries, and variously labeled, modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough -- nearly 300 sufferers -- to suggested that it was contagious. Then, as now, there was no real treatment and no clue as to the path of the potential contagion: Was it airborne or foodborne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link? None of those questions have been answered. What is known is that the disease can appear in clusters, but it is more often found in isolated cases. It has spread in families, but the spread is rare.

16) Will you consider retracting your "Editorial Expression of Concern" in light of the numerous and varied criticisms leveled by myself and others?

Amid all the controversy of whether XMRV "causes" CFS, we're losing the reality that some members of our community have been proven to have a retrovirus. Regardless of whether it "caused" their CFS or not, they now have proof that it's not all in their heads. And those who've been able to get on anti-retrovirals (AIDS drugs) after being diagnosed X-positive have improved.

About 5 years ago, I had my first C-Reactive Protein test, which was about 10x what it should be. Even though it couldn't tell us what virus I had, it did prove that there's something physically wrong. That seemed to make the difference for some people who'd previously been grasping at straws to find psychiatric explanations.

Not knowing which virus I have, I wasn't able to get anyone to prescribe AZT, but I was taken more seriously.

In my case, the treatment has been almost exclusively directed to improving the quality/quantity of my sleep. Sleeping pills finally broke the endless cycle of insomnia > pain > more insomnia > worse pain. Added bonus, sleeping 8 hours a night instead of 2 (if I was lucky) regenerated my immune system which was able to get the upper hand over the virus again.

When the sleeping pills that worked for me were no longer available, Dr. Murphree (www.DrRodger.com) recommended 5HTP, which helped me sleep naturally if the pain wasn't too bad. A Sleep Number bed also helped – yes, they're expensive, but I was able to work enough extra hours in the first year to completely pay for it. Finally getting a prescription for pain pills that work on neurological pain (Advil doesn't) also helped me sleep.

Am I doing as well as friends who've been prescribed AZT or Ampligen? No. But I'm doing a lot better than I was 10 years ago when I literally had one foot in the grave. If this is as good as it ever gets, I can live with it. If I were permanently stuck where I was 10 years ago, I would've crawled to the nearest bridge and figured out a way to fling myself off.

Some of the pills I've been given in the past decade have had weight gain as a side effect. One made me gain 4 pounds in a month; another put on 30 pounds in the first few months. So I'm no longer the sylph I was before I got sick. But that extra weight is a small price to pay for feeling this much better, and thankfully, my doctor recognizes that "all drugs have side effects" and isn't pressuring me to lose the weight that I gained as a result of what he was prescribing.

Some of the XMRV detractors have tried to say it's lab contamination. If that's true, then why do a large percentage of samples tested in the same lab come up X-negative?

That's one of the questions we need to ask every time they throw out that contamination red herring. Make them defend their accusations, which are just another way for them to deny that we're really sick.

I'm not much of a conspiracy theorist. I'll laugh off most of them. But I do have to admit that it sounds plausible that the government does not want to do too much research into CFS because it'll uncover something that will require them to pay significant reparations to patients who got sick, but didn't die. And, corollary thereto, that they need to discredit any research that comes too close to finding the truth.

It's immaterial to me whether CFS is ultimately proven to be caused by XMRV or if it weakens the immune system enough to allow XMRV in as an "opportunistic infection". What counts is that the people who have it have been helped with proper medication. And that should be the ultimate goal here – not wasting energy on arguing over the name (which CDC has already stated they're never going to change) or whether XMRV is the actual cause.

Those of us who live alone have very different challenges from those who have family nearby to take care of them. The biggest one is: how do you eat when you're too sick to get out of bed?

For a while I was going steadily downhill because the effort of getting to the kitchen three times a day to fix something healthy to eat required more energy than my body was able to make. A trip to the farmers market for fresh produce would result in the food rotting in the hallway because I didn't have the energy to carry it all the way to the kitchen on arriving home; I'd collapse into bed for 3 days and eat nothing.

Finally it dawned on me that fresh veggies decomposing before I was well enough to cook them were not as healthy as just eating something for nourishment. While I certainly wouldn't recommend a steady diet of PopTarts to anyone with an option, they do have a surprising amount of nutrition in them. They don't need refrigeration or cooking, and you don't need to wash a plate and fork after you eat one, so ideal for the bedridden single person.

My local grocery delivers, so I ordered a lot of shelf-stable things like PopTarts, packets of crackers pre-spread with peanut butter, dried fruit, trail mix, nutrition shakes, Gatorade, bottled water, and stored them next to the bed. That was the turning point ... I had enough energy to walk to the kitchen once a day to make a healthy dinner, but because I could get breakfast and lunch without getting up, my energy consumption was finally less than my energy production and I was back to putting into the bank rather than overdrawing every day.

Safeway has recently started carrying Horizon Organic shelf-stable milk in individual servings. On sale, I've been getting it for $9.99 for a pack of 12. That's one more thing that I can keep in the bedroom for emergencies.

Sometimes you have to think outside the box.

While eating the quantities of processed food I do is not ideal from a nutrition standpoint, it is certainly better than doing without food for several days because I used all my energy shopping for healthy food that went bad before I next felt well enough to cook it.

"Nations with long-term economic strength can also afford to support employment, education, and make health care widely available. The happiest countries seem to be places where there is a good balance of work and leisure time." The United States, obviously, does not make an appearance on this list of Wealthy, Happy Countries.

Why can't America have any happiness? Because the U.S. Declaration of Independence only allowed for the ineffectual pursuit of happiness, not the actual life quality of happiness. The richest 1% of Americans pursue happiness by taking everything from everybody else...

The truism that "negative studies are rarely published" has been turned upon its head with respect to XMRV research, where those who have demonstrated an ability to find the virus are starved for resources and shunned at every turn, while those who demonstrate abhorrence toward genuine replication are lavished with funds and granted journal space without so much as the peer-review equivalent of a gentle pat down.

Despite affecting an estimated 17 million people worldwide, CFS has always met with scepticism from some scientists, says Anthony Komaroff, a leading CFS researcher at the Brigham and Women's Hospital in Boston, Massachusetts. The likely fall of XMRV, he worries, will drive home that point. "That, in my mind, would be an intellectually inappropriate way to respond," he says, "because beyond XMRV there's evidence of an underlying biological process and infectious triggers that we need to understand better."

Llewellyn King has written a sympathetic article re ME/"CFS" and its sufferers that appears in today's Washington DC political blog RealClearPolitics. Appropriately enough it appears in the section titled RealClearScience.

This could be a great piece to use for educating political representatives and other powers-that-be, giving a much clearer idea of the destruction the disease wreaks on individual lives than news media can usually find room for. I'm [Deb] embarrassed to say I'm one of the female writers he features as examples, but then again it was seeing how completely the disease had stripped the life out of me that helped him to understand the larger story.

Link appears above. Article below.

----------<http://www.realclearscience.com/articles/2011/06/02/chronic_fatigue_syndrome_is_misunderstood_106242.html>Return to the Article

What's in a name? A great deal, if you suffer from awful, long-term diseases that have no cure.

Chronic fatigue syndrome (CFS) is a name that infuriates patients, who number perhaps 1 million to 4 million in the United States and 17 million worldwide. It also frustrates the small but dedicated cadre of doctors and researchers who have made the disease and its casualties their concern.

The Centers for Disease Control in Atlanta picked the CFS moniker in 1988, although the term myalgic encephalomyelitis (ME) is still in use in Europe and elsewhere and is favored by patients.

The new name quickly became despised because "it trivializes the disease and misleads people," in the words of Leonard Jason, professor of psychology at DePaul University in Chicago. Certainly it brings to mind chronic whiners and everyone's everyday fatigue.

Part of the misleading, Jason and numerous medical professionals have noticed, is that the name has allowed governments and psychiatrists, especially in Britain, to sweep a plethora of psychological diagnoses into the tent. This obscures the central unsolved mystery of CFS and its AIDS-like misery, while diverting government funding away from serious biomedical research. Jason and some of his colleagues believe that the most promising lines of investigation, pathogens, are being under-researched in the process.

Two years ago, the journal Science published the results of joint research by three teams of investigators pointing to the retrovirus XMRV as a likely culprit. But in a disappointing setback to CFS sufferers, the journal published two online articles Tuesday <http://www.nytimes.com/2011/06/01/health/research/01fatigue.html?_r=1>backing away from this conclusion. Although disheartening to the CFS community, this does not put everything back to square one. The most current thinking is that although CFS may be caused by a combination of factors, including genetic predisposition, the most likely trigger is one or more pathogens and the immune system's hyper-response to infection.

"The immune system pours out its toxins to stop this agent," Dr. Jay Levy, a University of California professor who co-authored the new studies told The New York Times. "And then the immune system doesn't calm down."

Although it has been around for centuries, and variously labeled, modern concern with the disease dates to a major outbreak at London's Royal Free Hospital in 1955. That outbreak was big enough -- nearly 300 sufferers -- to worry public health officials.

Its appearance in a cluster at the hospital suggested that it was contagious. Then, as now, there was no real treatment and no clue as to the path of the potential contagion: Was it airborne or foodborne? How about contaminated surfaces? Were bodily fluids involved? Was there a genetic link?

None of those questions have been answered. What is known is that the disease can appear in clusters, but it is more often found in isolated cases. It has spread in families, making it frightening; but the spread is rare, and seemingly random.

The next major event to get the attention of health professionals was in Nevada at Incline Village, a resort on Lake Tahoe, in 1985. At over 300 cases, it proved too big to ignore, finally attracting attention from the CDC as well as state public health authorities.

The CDC sent two young epidemiologists to investigate the outbreak, Gary Holmes and Jon Kaplan. They estimated the number of sufferers at perhaps 20,000 throughout the United States, a majority of whom were women. The same year, a second outbreak occurred in Lyndonville, a farming and manufacturing village in the northwest corner of New York state, with 216 cases out of a population of 900. Lyndonville only had one doctor, David Bell. He has followed the disease's progress tirelessly, and he has become something of a trailblazer in the field.

Over the years, the disease popped up around the country, attracting distinguished researchers in its wake. In 1987, Harvard Medical School professor Anthony Komaroff published a report about increasingly significant numbers in his Boston practice. Dr. Nancy Klimas, an immunologist and AIDS expert at the University of Miami, found her clinic flooded with sufferers from the new disease and soon found their immune systems showed strange characteristics.

The numbers were clearly overflowing the CDC's estimate, but no one yet realized the extent.

Then entered Jason and his team of researchers at DePaul University. They studied the disease in society from a psychological point of view and found in 1990 about 1 million sufferers in the United States.

They also believe the disease was caused by an unknown pathogen, was not psychological in nature, and that the cure rate was extremely low. Additionally, they and other researchers found that one of the prevailing symptoms was immune system suppression.

For most patients, CFS is a one-way ticket to hell. The affliction is acute and mostly incurable. Horrifically, it takes away even life's littlest pleasures.

According to many interviews and hundreds of e-mails I have received since first covering the disease, sufferers are hit first with symptoms of what seems to be flu. Sometimes there is a short, deceptive remission -- sometimes two or three. Then the pattern emerges of collapse after every exertion, especially exercise. Finally, full onset occurs: There are no more normal days, only different degrees of weakness, pain and other symptoms. Doctors term the disease relapsing and remitting. That means you might have weeks, months or years of slightly better days, and then stretches -- often years, sometimes decades -- of almost total helplessness. It is goodbye to the life you have known; goodbye to work, to hobbies, to lovers and spouses, to everything short of hope.

Deborah Waroff, a gifted New York author and securities analyst, is typical in the devastation of her life. Before, Waroff was a skier, a sailor, a passionate squash and tennis player. Now the aloneness of the disease weighs her down. Very old friends -- some from her days at Harvard, a few from childhood, a handful from work -- sustain her with telephone calls, when she can answer the phone, and some drop by. Nonetheless, the brutal loneliness is always there.

Waroff was first felled at the end of July in 1989. Her engagement calendar grew full of forlorn cancellations for dinners, parties and meetings. One day in 1991, a bad headache arrived that lasted three days; after that, it came again and again.

Gradually, with help from a tireless and creative doctor, Waroff began to find medications and methods that would allow her to work a few hours a day. Pushing herself with sheer willpower to complete a chore would exaggerate her symptoms -- more mixed-up speech, stumbles, near-falls, dizziness, rising fevers. Afterward, she would be immobilized for days.

Then things got worse.

In September 2003, Waroff woke up to find that she was too weak to fill out a simple form -- just to renew library books -- and fax it. That was the beginning of month after month of near-death incapacity. "I was as weak as you can imagine. I lay on the couch, its high back and sides making me think how much this was like being in a coffin, inert, my consciousness flattened by illness. I was too weak to read and often too weak to watch television. I would turn my back to the screen and let the sound wash over me, not taking it in."

CFS, like AIDS, suppresses the immune system. Typical symptoms include tremendous fatigue that is unrelieved by sleep, as well as flare-ups of herpes- family diseases (such as HHV-6 and Epstein-Barr). Other typical symptoms include swelling of the lymph nodes, muscle aches and other pain, dysphasia (the inability to use the right words), general cognitive failure, nausea and faintness.

Elisabeth Tova Bailey, once a professional gardener in Maine, was felled by CFS. Unable to leave her bed for more than a year, she filled her days by watching a single snail in a terrarium make its fascinating way through life.

When she was feeling somewhat better, Bailey studied the snail through the wonderful work of the 19th-century naturalists -- that special breed of romantics who studied by watching, rather than by dissecting in the lab. The result is the sweet, well-reviewed book, The Sound of a Wild Snail Eating.

The most famous person to have CFS, and to have managed in great adversity to be productive, is Laura Hillenbrand who has over time written two incontrovertible bestsellers, Seabiscuit: An American Legend and Unbroken: A World War II Story of Survival.

Hillenbrand's achievement is Herculean. She seldom is able to leave her home in Washington, D.C. In a recent interview, she told the story of how she had to leave her own wedding because she was so sick.

Statistically, two-thirds more women are afflicted than men. But I have heard from a lot of men, including a medical doctor and a young man, who was thrown out by his father who accused him of malingering. His plight is terrible, as is the plight of other people who do not have the intellectual capital or financial resources to do anything but suffer in isolation. Insurance companies drop coverage routinely, and many doctors misdiagnose or are influenced by psychiatric arguments.

Recovery, like that of DePaul's Leonard Jason, is rare. If it does not occur within the first two years, it is unlikely to occur at all. Usually only the young and well-supported socially are able to regain a good part of the health they once had. The beacon of hope in this wasteland of human wreckage is a private institute in Reno, Nev. Affiliated with the University of Nevada, it is called The Whittemore Peterson Institute for Neuro-Immune Disease (WPI). It was founded and funded by Harvey Whittemore and his wife, Annette. Their 33-year-old daughter, Andrea Whittemore Goad, has been a CFS sufferer since she was 11.

The medical establishment has been cool to WPI, and the NIH turned down all six research grant applications it made last year. But at least 1 million very sick Americans are cheering for this frontal attack on CFS, which they prefer to call ME/CFS in deference to the older, less trivializing name.

While these things are argued, the life in limbo that so many endure is described by Waroff this way: "You know the trouble with this disease? All this time goes by with nothing in it. You don't get a chance to put anything in it. It's just empty time."

It deeply concerns me that editors at such a prestigious scientific journal would call into question the October 2009 Lombardi paper after the authors were asked to jump through numerous hoops to provide authenticity of the infectious nature of XMRV in human blood. As a CFS patient, I have followed the science for years. It was a surprise to me that scientists found XMRV associated with CFS patients. However, it was no surprise that scientists once again found a retroviral agent in CFS patients given the severity of neuroimmune issues patients have and the fact that the most severe patients appeared to doctors as non-HIV AIDS patients in the late 80s/early 90s. Science requested prior to publication that CFS be removed from the paper entirely. Whoever made this request was well aware of the politics surrounding CFS research and that Science would have to stand behind publishing new scientific findings for a controversial disease. I am disappointed to find that Science Magazine apparently does not carry enough weight on its own accord to do so, and can fall so easily to government and scientific pressures to bury evidence of an infectious retrovirus affecting not just CFS patients, but numerous other related neuroimmune diseases and cancer.

This year we are asking patients to help donate auction items for I Hope You Dance Gala September 15 2011. If you are interested please write kjones@wpinstitute.org . We can send you an auction letter and form. We are asking for help for trips, concert tickets , high end art , sporting events and creative ideas.

This Sunday marks the 30th anniversary of the first reported case of AIDS.

In that time, AIDS has gone from a death sentence to merely a chronic condition thanks to proper research and pharmaceutical therapy.

In 3 years will be the 30th anniversary of the Lyndonville and Incline Village CFS outbreaks.

In that time, it's gone from a life sentence (often served in solitary confinement) to ... a life sentence (often served in solitary confinement).

Many patients are offered nothing but antidepressants. When you report that the first one doesn't help (or makes you sicker), you're offered another and another. Rather than accepting that perhaps his diagnosis is wrong, the doctor will reassure you that the reason there are 300+ varieties of antidepressants on the market is because the same one doesn't work for every person. And some doctors are determined to try all 300+ antidepressants (i.e., 30 years of experimentation) before they will admit that maybe the problem is not depression and try something else. Meanwhile, the patient has suffered permanent physical damage from the decades of medical incompetence.

The only medication that seems to work miracles for CFS patients, Ampligen, has been stuck in FDA limbo for decades ... which boils down to politics: the FDA will not approve an anti-viral treatment for a disease CDC says is purely psychiatric.

Dr. Mark Loveless, an infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, proclaimed that a CFIDS patient "feels every day significantly the same as an AIDS patient feels two months before death."

Dr. Nancy Klimas, who also treats both illnesses, states: "My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."

Why? AIDS patients were healthier longer after infection and had a circle of physically able friends who were willing to do something pro-active. CFS patients are often disabled from the first day and their friends and family are often not supportive, accusing them of laziness or depression, rather than accepting that this is a physical illness. Therefore, we're not able to stage huge demonstrations ourselves, because we're home in bed, and our friends and family are confused because we "don't look sick" and therefore they're not particularly motivated to hold a demonstration, either.

Another difference: men were at the forefront of the AIDS epidemic; most CFS patients are female. When I first got sick, my boss had similar symptoms. His doctor sent him all over the state for more and better tests with the goal of keeping him well enough to work. My doctor did one round of basic blood tests and when they came back normal (because he hadn't done the right tests), told me to grow a backbone "tell your husband you don't want to work, you want to be a housewife". He never did get it that I wanted to go to work, I had no desire to "stay home and watch soap operas"; that's what his wife wanted to do, therefore that's what every woman wanted to do.

No, most of us physically can't attend a protest march, and we would have to hold a sleep-in rather than a sit-in, but we now have something the first AIDS patients didn't: the internet. We don't have to spend money on long-distance calls or postage -- we can e-mail for free. Write e-mails to the government agencies, elected officials, and media. When you see something that proves CFS is physical, not psychological, send it to them. Eventually, the barrage will get their attention.

Mind your manners -- there's a way to be forceful and polite at the same time. Hysterical rantings laced with profanity serve only to prove the point that we are whackjobs rather than physically ill.

Let's not reach our 30th anniversary having made almost no progress from Day One.

Kelly has been scurrying around posting the following type comments hopingthat they will click with someone if not the journalist who wrote the piece.My favorite was some guy who wrote into US News and World Report soundingvery scientific about why viruses are not involved in CFS. Kelly had far toomuch fun poking very polite factual holes in his blather. He hinged hiscomments on incorrect scientific information which I was able to demolishwith the aid of Vincent's site which then made my assertions about virusesin CFS all the more credible.

Anyway, here's what I wrote on one site. I know patients want to hang ontoXMRV, but I'm more worried about the long term if XMRV doesn't pan out - andit is not looking good. I'm afraid opponents such as the CDC will use XMRVas an excuse to stop all virilogical studies regarding CFS.

XMRV may no longer be considered a viable etiology for CFS, but many of theresearchers who have published negative studies such as Dr.Konnie Knox andDr. Jay Levy's group and Dr. Ila Singh's group from the University of Utahhave all stated that they believe CFS is initiated by one or more virusesand that viral research into CFS should continue - just not on XMRV. Dr.Vincent Racaniello,whose award winning virology blog is visited byscientists and lay people alike, agrees saying that a faulty immune systemalso seems to be a piece of the puzzle.

It was gratifying to see that Vincent Racaniello is on the record saying CFSis an infectious disease with immune dysfunction caused by viruses. I neverenvisioned the wild ride and twists things would take when I made hisacquaintance in early 2009, but it was worth it in the end I think to gainsuch a popular ally who is teaching the microbiologists of tomorrow. Itseems ages ago that he told me the CDC was emailing everyone and theircousin trying to squash XMRV and viral involvement in CFS in the fall of2009.

Tina asked me if you had put the ICD-10CM stuff up on your site and I toldher I didn't know.

I recently joined a group of professional health journalists where I havethe option of writing a piece on a topic of my choice. I think I'm going tojust ignore things for a time in order to focus on an article on reportingon diseases where psychiatrists claim one thing and biomedical researchersclaim another. I truly believe that without journalists putting solidbiomedical information out in the public sphere it will be harder tomaintain pressure on the NIH and the CDC.

K

-- I learned very early the difference between knowing the name of somethingand knowing something.

Here is Dr. Mikovits' response to the EEC, link, Annette Whittemore's response, link, and the response of the WPI's Clinical Advisory Board, link, sent to Science over the weekend.

It can't be both a contaminant and not there at the same time. Which is it? The totality of the evidence says neither. Why is no one asking the real question? How is it that VIP Dx finds approximately 4 out of 10 patients positive, not zero and not 100%? How do you explain contaminating only some of the specimens in the same run?